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Patient Stories

If you are affected by Lyme disease or other tick-borne infections and want to tell your story, please send it to patients@ticscotland.org.uk. Please note that we don't have enough resources or energy to answer questions. If you are worried about possibly having Lyme disease and need to ask questions, please contact Lyme Disease Action.

I am an American who was living and working in Scotland, first as a post-graduate student, and then on a work visa. I love Scotland more than I can express - it is home. In November of 2016, I was living in central Edinburgh, when my flat was infested with mice from the nearby Holyrood Park. One morning, I woke up with something crawling on my scalp. I couldn’t see anything, and washing my hair didn’t seem to help, so I assumed it was just a strange nerve reaction on my head, and forgot about it.

I am currently diagnosed on the NHS with fibromyalgia, chronic fatigue and IBS. I began to suspect Lyme was my issue in 2015. I'm 36 now, and on researching Lyme, realised I have been experiencing symptoms since I was a child. As a teenager I suffered bouts of wry neck, recurring sinus infections and tonsillitis, migraines, TMJ, and random breast milk production, which resulted in mastitis. At this time I had no children and my GP's were baffled. I went on to develop digestive issues in my early 20's, I had stomach ulcers, then gallstones, I had my gallbladder removed at 25.

I am Annette, 53 yrs old with 3 children and 4 grandchildren. I stay in a small village in Fife, where I was bitten. I loved my job as a social care worker and enjoyed a full and active life. My favourite time was walking my dog 4 miles each day along the beach then heading back through the fields.

It was around my 60th birthday - unforgettable really because the family had booked a hotel and tickets for Les Miserable in London. Every morning I take my two dogs, as it was then, for a walk. There is a nice area of heath land less than 200 meters from the house. It has well defined pathways and the dogs can roam as they will. I must have been bitten though don’t remember exactly; there was no evidence and no EM rash. The first I knew that something was wrong perhaps a couple of days later when I had pretty severe coughing bouts and felt as though I was coming down with the flu.

On holiday in Luxembourg. At swimming pool & after a swim I lay on towel for a few minutes of sunbathing (legs on manicured cut grass). After short time sat up & found tick attached. Tick carefully removed with tweezers. Tick was only attached for short time. No rash & no symptoms. Three and a half weeks later had stiffness between shoulder blades in bed and feeling not quite right - couldn't get comfortable. Remembered tick bite & looked up on Internet & went to see GP. GP wanted blood test done but did not prescribe antibiotics.

Hi my name is Jerry and I am Shonagh's husband. I too have Lyme. I spent most of my working life in Outdoor Education so I was fit and healthy. Although I had many tick bites over the years I had never had a bullseye rash and was always careful about removing ticks.

About five years ago I started to feel listless and struggling to do the things I had done before. I went to my GP who initially referred me for bowel cancer. According to the hospital specialist she had been feeling old scar tissue! At Shonagh's suggestion I asked to be tested for Lyme.

I was a fit, healthy mother of three children living in Edinburgh. In 1993/4 I was on holiday in Sutherland. I had a tick attached and was unaware until a friend noticed and whacked it off my leg. Unfortunately, by this time it was bloated, satiated and leaving anyway. I knew nothing about Lyme. My friend had no idea it had been attached. I actually thought that as I had no beastie bite reaction that nothing had happened.

In 2010 my husband and I moved to Leitfie which is an area just south of the town of Alyth in Perthshire. In Summer of 2011 I had been walking around the fields near our cottage for the best part of the previous year when I noticed what seemed to be strange ring shaped marks on my legs. There were multiple bites and they looked like bull's eyes. I recognised them immediately as potentially being Lyme Disease and promptly went to my G.P.

I'm Lorraine from Montrose, North East Scotland. I was bitten by a tick end of August 2014. I remember the date clearly as at the time I became ill I was away celebrating my 10th year Wedding Anniversary with my Husband, I spent 4 days in a hotel room bed unable to move. A few days beforehand, I had a little black thing at the top of my leg but I hadn’t realised it was a tick. I did not have a bulls-eye rash, but was completely exhausted with flu like symptoms, high temperature, exhaustion, random stabbing pains and feverish.

I was bitten in 2004 while playing hide-and-seek in Beecraigs Country Park near Bathgate. I went to the GP a few weeks later with a persistent rash. The first thing he said was "Did you have any flu-like symptoms at the time you noticed the rash?". I replied "Yes, I had a full day of horrific vomiting and chills. I didn't know whether it was flu or food poisoning". His next question was "Have you been anywhere in America where you could have got Lyme disease?". He thought it was only possible to be infected in America, and so my opportunity for early treatment was missed.